To be confused by SEN, Autism, etc in children?

[Sallygoround631]

A sensitive topic, but I am curious, and hope that it isn't somehow improper to ask.
I admit to ignorance, because I don't have children, and I have not had much experience with children with SEN, Autism, allergies, etc.

What I want to know is, in your opinion, are there more kids with these issues now than, say, 40 years ago, when was a kid in the 80's? (when everything was put down to orange smarties and over activeness)

Was it simply less diagnosed or unknown, and put down to other, behavioural issues?
If so, then I am very glad we are no longer living with such ignorance.
But I am also curious to know if these cases have increased, or merely been there all along?

If they have increased, what are the reasons? Does anyone know?

I feel this is a tender topic and do not wish to cause upset. I am absolutely out of the loop and would love to hear about it.

Educate me!

@Sallygoround631

Apologies I am not sure how to phrase such a nuanced question to google. I see a lot of posts on MN regarding these issues and am genuinely interested. I mean no disrespect and would like to learn.

No one can be that stupid that they don’t know how to put a question into google. You sound like a journalist.

Diagnostic criteria widened considerably (DSM IV, although DSM V is arguably a step back). This means more people around the edges of the criteria, who many display fewer traits or appear to have less severe manifestations of those traits, get diagnosed, where in the past they would have been considered odd, naughty, antisocial etc.

Imho diagnosis should not be the gatekeeper for better support for people who are struggling. Also we should be considering how as a society we can better accommodate and tolerate different needs.

And no people aren’t all a little bit autistic. You’re either pregnant or you’re not. You’re autistic or you’re not. And it’s offensive to those struggling daily to say “oh we’re all a little bit autistic”

This is true of course. But some of the traits by which autism is diagnosed can of course be present in someone who is neurotypical. However, to be diagnosed as having autism, the various "deficits" eg in non verbal communication or in making relationships etc, must be persistent, and
Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

The part which is difficult for the lay person to understand is the subjectivity of this. One person's clinically significant impairment can vary from another's.

@EleanorOlephantisjustfine

No one can be that stupid that they don’t know how to put a question into google.

Goodness, how absolutely ignorant of you.

I am not stupid and I can easily put a question into google, what I cannot do however is work my way through all the links etc it gives back. I really struggle when presented with a lot of information, to the point where I will often get DH to check over any important mail in case I have missed anything. In fact a few months ago I did a PCR incorrectly (a home test) because i was paying so much attention to how to test that I missed completely the information about registering the test before mailing it back and I ended up posting it unregistered and without the barcode information I needed. I'm not stupid, I am educated to degree level, but I struggle a lot when it comes to finding things out because I do not know where to start when google gives me so much.

You sound like a journalist.

Whether OP turns out to be a journalist or not this thread has raised some interesting talk.

One of the most important points to consider is that diagnosis itself is made on the basis of how big an effect the traits have on every day life and ability to function in a world largely designed for neurotypical people.

My child has a diagnosis, but a lot of his traits can be seen in me and in his father. For me and my personal experience, I have a lot of ‘quirks’ that could be seen as being autistic-like. I am suspicious of new food, have some sensory issues (can’t concentrate if my clothes are annoying me, prone to losing my shit when overwhelmed), don’t really like people in large groups (prefer 1:1 or maybe 1:2), don’t like crowded places, obsessively plan e.g. for a trip/journey. At school I was super clever, made friends easily enough but didn’t have really close friends. I am highly educated. I am undoubtedly good at masking, but even then I don’t think I would get a diagnosis because my day to day functioning isn’t significantly impaired by my traits. My sister and my dad, however, both have had much greater difficulties fitting in to the world. I highly suspect that they would receive a diagnosis if they pursued.

I hate the "it's not my job to educate you" brigade. Actually most of us don't have to deal with this or have exposure to children with SEN on a regular basis - but there are many, many other things in our lives that we do have to deal with regularly and therefore educate ourselves on. If someone asks a question that will help educate and inform and ultimately help your child why would you not answer? It's not top of my priority list to google because it doesn't impact me, but threads like this help my understanding enormously which surely is of benefit to anyone with SEN. If someone asks me a question about being a female in a male dominated workplace, or having a miscarriage or bringing up a child I answer the question - I don't tell them to look it up in google

@Emilyontmoor

My DB was so dyslexic that he couldn’t read at 11. My Mum had just trained as a teacher and had him diagnosed and hired a specialist tutor. This was in the 70s The Headmaster at his school said “The trouble with you middle class parents is that you cannot accept that your child is thick.” He became a very successful engineer.

Because I had learnt to read, albeit slowly, but then voraciously, and though I never learned to spell and was a complete mystery to my teachers as my insight in the humanities classroom never translated to good marks in exams, assumed to be laziness and “insouciance”, it never occurred to me I was also dyslexic. I just gravitated into a career where my way of thinking was an advantage and developed other coping mechanisms. Every single one of my DB and I’s children have been diagnosed as dyslexic, and have had the support to achieve their potential.

In my career I facilitated very senior managers, MDs and Board Members to develop strategic plans. It was so common for them to be holistic thinkers who could see the wood for the trees but absolutely hopeless on paper………..

Of all the posts, I think this one is the one that resonates hugely.

To start with, I think the qualifier "in children" from the title is something that could cause some hackles to rise, because it seems to rest on various assumptions, such as: you can grow out of it, and it really only affects you in childhood and in school situations. Perhaps it's basically just like having too many orange smarties, tee hee, we've all seen it but we don't have to put ourselves in that situation...

Well, it's not. You don't grow out of it. Depending on what your struggles are, you can possibly hide it sufficiently to try to fit in, but the effort can be huge, relentless, and can run down like a battery with nothing that you can do about it. There's often a judgment imposed that supposes that things like mindfulness, dialling down stimulation, not pushing yourself too far (intellectually, say) and so on, can fix it. It helps, but what if your buttons are not pushed by obvious things? Or if you happen to be trapped on a train or plane when this happens?

There are stereotypes that seem to be fine with high functioning autistic people going into, say, IT, science, languages, work with animals maybe. After all, surely that's where 'they' are best? But if you are going into management, you might be thought of as weird or uncharismatic because your eye contact wasn't 'normal' in an interview, and that would be thought of as a good reason (never mind what other skills you might have or be able to develop).

I read a great article that I now cannot find about an autistic teenager getting very lost in a forest trek scenario, and separated from their group. Their parent was quoted at length about them being found by water (a major river), saying that it was likely they would be found there because they had an autistic fascination with water. That would be fine, except - the whole group had been taught to look for water as a navigation aid as part of the trek!

A person's autism, ADHD etc. can affect YOU mildly, because you don't see or feel how it affects THEM. If it doesn't affect YOU mildly, it's usually thought of as inconvenient in a high percentage of situations calibrated to be comfortable for neurotypical people.

Agree 100% @whatthejiggeries

I am always more than happy to answer peoples questions - when asked in a genuine respectful way - personally I don’t see how we can expect others to understand if we aren’t willing to help them do so.

And The Autism History Project, online, is perhaps an interesting area to browse, with an intention is to educate and the resources to do it. The Hans Asperger entry, for example, often has elements to it that people are surprised to see on many levels.

I was diagnosed as an adult and I can totally see that there were many kids when i was at school who had additional needs as well as me. I can see it in family members too.
I think back in the day these kids were usually in trouble a lot, dropped out of school early or didnt achieve but blamed it on themselves. Also got a lot of behaviours beaten out of them

Personally I believe there's a 101 reasons why it looks more presents these days. I have learning differences, adhd and dyspraxia and its clear to see that my difficulties are echoed in my dad and his family line. I was educated from late 90s to 2010s, my dad till the early 80s, and obviously his parents way before that. The differences in our education is stark.

My dad was labelled as thick really early on and there was zero curiosity as to why he couldn't do it. If you couldn't get it out eloquently on paper or in class then you were written off as thick. When I was at school, things were taught in multiple ways so it was apparent that although my written work wasn't great that I had the knowledge and learnt better in certain ways (not tried or offered to my dad) . This lead to testing and a diagnosis but more importantly more accessible education for me.

My education lasted longer, I was forced into all sorts of classes, gcses etc that probably highlighted how much I struggled. My dad simply didn't go to lessons after a certain point and was allowed to follow a vocational route that much better suited his needs (and probably hid his needs), he will tell you that his friends who were similar got expelled, bullied etc, just sat in classes to get awful grades at the end.

There was a huge element of shame. My dad has always just felt that he was bad at reading, its only when I was testing an overlay that he realised he could read much better through it. How would he have known he wasn't just thick like his teachers said? How would he have had the words to explain what was happening? In my dads words he was either functioning enough to go to school or he would go to the specialist schools that were horrific. No one would go there unless there was zero other choice

Its shameful but there was a certain element to my dad that was "beaten out", he was shamed and shouted at for his adhd features at school. It didn't make his focus better or make him less adhd but taught him how to hide it at times. He wouldn't have put him self out there to ask for more help, because there wouldn't have been much support but his dad would have wacked him and he'd have been mocked. His mums family have some "missing aunts" that were clearly autistic based on descriptions and one was just viewed as odd and lived an unusual lifestyle, the other went to live "away". My dad did not want to have to live away as he knew by the hushed tones what it meant. He was kept away from family parties or there on his best behaviour etc for fear of getting hit if the adhd showed. There's also a history of homelessness etc on my dads side

Me and my dad are very similar and its taken him a lot to unlearn what he was taught. His instinct was for me to act normal at all cost, Its only by seeing me get my degree etc that he realises that its not hidden anymore.

Massively under-diagnosed back then & still is today. I can look back & spot several classmates & cousins who should have been diagnosed & helped, but weren't

@Ormally I read a great article that I now cannot find about an autistic teenager getting very lost in a forest trek scenario, and separated from their group. Their parent was quoted at length about them being found by water (a major river), saying that it was likely they would be found there because they had an autistic fascination with water. That would be fine, except - the whole group had been taught to look for water as a navigation aid as part of the trek!

I'm confused at the point to this tale?

Absolutely agree with your last paragraph, even with my own dc I fall into the trap of finding their ASD annoying when it's impacting my life more (eg. meltdown when we're just going out and already running late, inability to understand what seems a perfectly easy concept, 'over-reaction' to something ordinary like dropping a dish).
Oh and that's something that isn't always said, us parents of children with SEN or additional needs aren't bloody saints, we don't always 'cope with what we're given'. Sometimes my dc are bollocksy bastard annoying *I say the wrong things, I forget about how difficult something can be for dc (both mine were diagnosed quite late) I'm only human. My dc are teens so if I'm being irritated dd in particular will pull me up and say 'I can't help it Mum' and then I have to try and bite my tongue because she's right and she can't help it but equally I can't help being irritated by it!! There's a lot of martyrdom about having children who aren't NT, I wish there was more honesty on forums (which aren't SEN forums - where parents tend to be a lot more honest!) about the frustrations too.
*disclaimer: although I love the very bones of them

I read a great article that I now cannot find about an autistic teenager getting very lost in a forest trek scenario, and separated from their group. Their parent was quoted at length about them being found by water (a major river), saying that it was likely they would be found there because they had an autistic fascination with water. That would be fine, except - the whole group had been taught to look for water as a navigation aid as part of the trek!

I don't understand this, so it may be a great article in your mind but to me it's just a story that makes no sense. Can you explain it?

Regarding the river story (maybe it helped to read the actual quote that I can't find) - my point was that the NT parent was so sure the child had 'sought out' water because of an irresistible autistic drive to go to the thing that fascinated them, with no other critical ability to apply. The way I read it was that it was a sensible piece of behaviour that NT trekkers had also been instructed to remember as part of their experience, being able to navigate - find a river and follow it. So by doing that, NT and autistic trekkers would be doing the same sensible thing for the same reasons, no added polish of NT-ness.

I understand this is a sensitive subject for many, but as someone whose niece has been recently diagnosed with ASD it has been enlightening.
We have a complicated blended family so I don't see her or her parents often so have no idea how to say it. To the posters who are saying the OP should google this, I did and found lots of information. But I would much rather hear from parents about their direct experiences. My niece doesn't seem to obviously have any of the classic traits or behaviours Google brought up.

Questions like this sting so much because we’ve typically spent our entire lives being told that we’re wrong, or we’re weird, why can’t we just be normal and stop acting out. Typically no one stops and questions what might actually be causing the issues, it’s all on us to fix the problem.

There’s not more ASD/ADHD/SNs now, it’s that we diagnose people now, rather than just locking people away, out of sight out of mind. Diagnosis doesn’t always mean we get help; I was a massive overachiever at school, but the wheels fell off at university, and now as an adult, I barely cope. Employers rarely care about the reasons why, we’re just an inconvenience, unless you happen to fit the Sheldon Cooper model. And it fucking hurts.

So no, there’s no modern increase in prevalence, and no, not everyone is ‘a little bit autistic’. A lot of us don’t talk publicly because the backlash is too intense, which is why so many people have responded in the way they have. We just want to be accepted as we are.

@Ormally so the autistic child behaved in the same way as the NT children would have? Having both been advised this was the sensible course of action if lost? So the mum’s input was irrelevant/unhelpful and the child having ASD was not relevant to the action they took? Still not sure I understand but I do know you mean it as a positive thing not negative!

[quote AliceLivesHere]@covidcloser

"The 'spectrum' doesn't have ends. It's not a mild to severe line."

Mild as in mildly affected. Severe as in severely affected. A spectrum very much has ends.... you know... one end mildly affect and one end much more severely affected - that's what a spectrum is![/quote]
the trouble is, people define it by how badly it affects THEM, not the Autistic person. Trust me, if an autistic person is 'passing' as NT, they've worked fucking hard to manage their impairments so as not to bother people around them.

The 'spectrum' isn't linear, its actually more of a wheel, each person having varying degree's of difficulty in different areas.

Remember, you don't get diagnosed with Autism unless you are significantly hindered by it in your day to day functioning.

You either ARE autistic, or you AREN'T.

Thanks ThyName, that's appreciated. It's frustrating to be misunderstood but I think it shows me that I am seeing it from a non-NT perspective, not expressing it very well. and that it's pushing buttons quite quickly. I think the NT parent judged and read something into the scenario that it was 'just' an autistic fascination that led the person to water, whereas if the trekker had not been autistic, it would have been applauded and instantly interpreted as remembering the training and applying it successfully.

and no, it isn't our 'job' to educate people.

However, its only through the sharing of experience, knowledge and understanding, that we will raise awareness and encourage tolerance of Autistic people.

I have NO problems in educating people who are genuinely curious and seeking to understand Neurodivergence and how it works.

Tbh if my son wasn’t autistic it might be a question I asked myself as well.

I am also autistic but as a child in the 70s it wasn’t recognised.

One thing to keep in mind is the focus on adverse traumatic childhood events.

I have thought for a long time that some chikdren diagnosed with ADHD were actuallly exhibiting syptoms of post traumatic stress disorder. I have ADHD and so does my son so I k ow absolutely that ADHD exists. However I do believe we see some children who exhibit all the signs of ADHD who are in fact exhibiting trauma based responses. There’s a whole body of work now looking at this.

Many of us have experienced trauma in childhood and it’s then about identifying children who have this experience AND have ADHD (being traumatised doesn’t mean a child doesn’t have ADHD) and those who have experienced trauma and exhibit signs of ADHD but don’t actually have this. Appropriate support can then be given.

I had a terribly traumatic childhood but had symptoms of dyspraxia and ADHD long before that occurred.

Sorry if the above is garbled.

Oh yes, this too, in spades, Fecking:

"Diagnosis doesn’t always mean we get help; I was a massive overachiever at school, but the wheels fell off at university, and now as an adult, I barely cope. Employers rarely care about the reasons why, we’re just an inconvenience, unless you happen to fit the Sheldon Cooper model. And it fucking hurts."

It's very demoralising to put your trust in an inclusion policy that, in practice, is all about how the neurodiverse should work to fit in.

I was diagnosed with autism as an adult after decades of not understanding why I didn't fit in, repeated failure in work and education, and finding so many things difficult.

I know many, many people with similar stories, from people in their 20s who were fobbed off by the underfunded CAMHS system or by schools and GPs who were either too busy or lacking in experience to see the signs, to people in their 60s and 70s who are only just realising there's an explanation for all the difficulties they've had.

So there is massive underdiagnosis, not just cases being missed, but also because these conditions weren't recognised when we were younger and even recently were thought not to exist in adults. There are years long waiting lists for NHS assessment and private assessment is expensive so not available to many. So, even people who realise they are autistic (and similar with ADHD I think) don't always get an official diagnosis.

I still get told a lot that I can't have autism because I seem 'normal' - yes, I'm good at masking, but it comes with a huge mental cost - depression, anxiety, breakdowns; or people think it's just a way of 'excusing' my failings.

Things have improved in recent years, but far too many people (including medical professionals) are only concerned with outward behaviour and appearing to cope.